A Letter of Hope

For my Health Class we had to do some act of service to the Health community (it was last year). I chose to help the PKU community. I did an assortment of things: collect coupons, make phone calls, lot of diferent things. But my favorite was probably writing this one letter to new parents of a PKU kid. I still have it. It's part of the new gift packages they are giving to new parents of a PKU'er. When parents first hear the word Phenylketonuria it's like the world is falling down on them. I know. But this letter was meant to give them hope. To show them someone with PKU can have a typical life full of adventure and fun. They can function and live. Funny thing... this blog was made to show the world the very same thing. Guess it impacted me more than I knew. Anyways I wanted to post this letter because it's very special to me. It's my contribution to PKU. I like to think it helps people, and that people are actually reading it this moment. Here it is:

Dear new parents,

Phenylketonuria, a genetic disorder in which the diagnosed does not process the “essential” amino acids called phenylalanine. It happens to one baby in 10,000. It’s rare enough that you rarely have another person with it in your school. How do I know all of this if it’s so rare? I was diagnosed with “classic PKU” 2 weeks after my birth. Classic PKU is when the enzyme that’s supposed to break down the phenylalanine is nearly too completely deficient. I am lucky though; my sister was diagnosed with classic PKU as well, I am healthier than other high school students, and I have supporting parents who guide through life. As you have just found out your child has PKU, I just want you to know two things: your child can have a healthy, normal, happy life; and that your support is needed.

Every morning I wake up early for swimming workouts- I’m on my school’s swim team- I work hard and by the time work outs are over I’m starving. So I quickly get dressed into school clothes and hurry to the cafeteria. I eat the breakfast I brought from home (Working out on an empty stomach burns more calories), usually it’s fruit or a slice of toast made from PKU bread. Once done eating I talk to my friends, who have just arrived, until the school bell rings. Not to brag or anything but I do well at school. I have A’s in all my subjects except math. At lunch I eat the lunch I made myself from home. It’s usually fruit and vegetables. But sometimes it includes a sandwich or some cookies. I have swimming every other day after school but afterwards I start on homework. When it’s dinnertime I’ll whip up something simple like a baked potatoes, some scrambled eggs (PKU version), French fries; all depending on how much PHE I have left.

I weigh everything I eat and try to write it down in a diet record. Once a month they need a blood test from me, so they can examine where I’m at. It I need more PHE or less, whether I need more “milk” or less. It’s all a balancing act. (On the “milk” that’s what I call the medical drink they give me to drink to replace my calcium and other vitamin levels.) Every six months I visit the doctors at Primary Children’s and get a checkup. They work on Mondays so I miss school. Those are some of the bigger differences between me and other kids. It’s not that hard.

I have had sleepovers with friends at their house, played at their house; I’ve had dinner with their families. I just eat what I can have. I bring food to parties if I know I can’t have what their eating, nobody cares. I’m an average American girl. Who loves to swim, write, read, dance, play violin and piano, and who likes horseback riding. I am in -- grade and loving high school. I dislike math and heights. I am a typical teenage girl. With a little loving support, and understanding your new baby can have a wonderful, successful future. Phenylketonuria isn’t a death sentence; it’s a lifestyle.

With Hope,

Cassandra Baggaley

P.S. A lot of who I am today is because my parents who love me, and I want to say thank you to them.

(Remember this was from last year)